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Shellly

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Reply with quote  #16 
Hi Layla I was diagnosed with CVS last June but I've had it for 33 years , it was by luck a German consultant was at the james paget hospital last year , she was on the ward I was on and she told the doctors what I had , I was so pleased to have a name to this awful condition, I've just come out of hospital 4 days ago , I was in jph for 6 days , I go back to work on Monday, I always feel so weak after being so sick I have to take time off work to recover. My CVS can be triggered by lots of things stress , worry , nerves, and if some one has a bug I always get it as immune system is low , my family know to stay away from me if they even have a cold because it will go straight to my stomach and I will end up in jph ,
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Layla

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Reply with quote  #17 
Mine all started 14 years ago just started being sick from know where took Norfolk and Norwich 6 years to say what I had bit they seemed 2 know abit about it...and is another girl I met there who has it to.. mine triggers are stress tiredness eating late eating greasy foods. But like you any cold or bug and straight to hospital for me just can't fight it. Once start being sick I don't .. I find myself laying in hot baths fighting to keep fluid and meds down. I now 32 and all started when was 16. I've learnt to live with it but with my little girl and day to day can be hard.. glad you on the mend. Rest and sleep and hopefully you be fighting again. Till next episode. .. that's the hard part knowing it will come again x
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Layla

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Reply with quote  #18 
Mine all started 14 years ago just started being sick from know where took Norfolk and Norwich 6 years to say what I had bit they seemed 2 know abit about it...and is another girl I met there who has it to.. mine triggers are stress tiredness eating late eating greasy foods. But like you any cold or bug and straight to hospital for me just can't fight it. Once start being sick I don't .. I find myself laying in hot baths fighting to keep fluid and meds down. I now 32 and all started when was 16. I've learnt to live with it but with my little girl and day to day can be hard.. glad you on the mend. Rest and sleep and hopefully you be fighting again. Till next episode. .. that's the hard part knowing it will come again x
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Layla

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Reply with quote  #19 
But a big trigger for me is my menstrual
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Shellly

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Reply with quote  #20 
Wow , your symptoms are similar to mine ......
I can't eat late , tiredness, some foods , I can't even have a sip of alcohol as I know where I'd end up . It's so sad having to live like this , I know lots of people are worse off , but I hate being sick as like you once it starts it don't stop , in June last year I was sick 50 times in 3 hours , and then I passed out , it really takes a toll on my body , I have to watch what I do everyday, even if I get too excited I know what will happen, I have to keep to the same routine, and have meal times about the same time of day ,
I'm on amitriptyline at night , then if I feel a attack coming on I take ondansetron, and if that don't help I take cyclizine, but to tell you the truth I take the medication every day but I know I'll end up in JPH .
I try to be strong and think this time I won't end up in JPH but deep down I know I will.
Mine always start in the middle of the night, I wake up very dizzy and feel very faint and then I know what is in store for me , I wake my husband and say quick get me my tablets , but they don't really work , but I have to try to take them just in case ......
I've had lots of time off work , but don't think they are very pleased with me , as they don't understand what I'm going through.
I wish I could be a normal person and when I get ill , I can be sick a couple of times then be ok . How lovely would that be .
Before I had a name for this sickness, I used to think what is wrong with me , why can't I stop being sick , but this CVS is like no other sickness, it's just the feeling of being sick all the time .
Take care
X

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Layla

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Reply with quote  #21 
No alcohol for me either I had one wkd and was in hospital for 5 days for it...tba3ts how i look at life I keep fighting and know i be ok once it's over just when start eppisode I do feel sorry for myself and sometime If wasn't for family I cud give up. People don't realise how hard it is. I can't stop once start and reach that much that I rip tummy linging and strart being up dark blood.. I go into a coma like state and can't even hard speak I go pale and all drawn and like you say the feeling of sickness just don't stop. You just lay there awake and watch the time pass.. I'm on all of those meds to but to be honest once you start they don't work or even take the pain away..mine always start middle of night or early hours of morning and will wake and just sit up and bring up bike then start sweating and all down hill from there x
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Shellly

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Reply with quote  #22 
Yes I go into a coma like state too , once the sickness starts I roll up in a ball in bed and can't move , my grandson said to me once ( May last year in jph ) why are you so white nanny , jph have told me I should drink more water and try to get out of bed and maybe it will help , people don't understand what it feels like to have this CVS . Last May I was in jph and I got out 4 days before I went on holiday, I was so worried I'd be ill abroad.
On Christmas Day my grandson got a game called I'm a celebrity get me out of here .....
We all played it but I wasn't allowed to eat the nasty things just in case it started me off being sick , how sad is that .
As I'm getting older I'm getting worse with this CVS .
I'm eating lost of lovely chocolates this week to make up for last week lol .

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Layla

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Reply with quote  #23 
I can't move if want to I go so weak and as for them saying drink more they don't understand nothing stay down.. I try telling myself I'm fine it will pass but no matter how much you tell you self and want to just get out of bed and fewl well. You can't. Not till it's ready to settle and sickness stop...don't think I would dear eat them either. I stick to want I know i can eat lol bless him. Ive never dear go abroad 2 sceared as was having eppisodes at least one a month.. mine has got alot worse too ... have some chocolate for me ; ) enjoy xx
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Shellly

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Reply with quote  #24 
Yes it's horrible when your having a episode of CVS , nothing stays down , a few times in jph a doctor/ nurse have come into my room and tried to give me tablets to take , my husband looks at them and says " and where do you think they will end up " she needs a injection and a drip put up , they will end up on the floor,
Whilst in hospital I see all the other patients eating and I think to myself why can't I eat , and be well , then when I'm coming out of a cycle I try to eat but can only eat small amounts.
We're going 10 pin bowling tonight something to take my mind off last week , I'm not any good at it but it's a bit of fun .
Every morning I wake up , I think to myself let me be ok today. I always wonder if I'm like this now what am I going to be like when I'm really old , I worry about everything, and that's one of my biggest problems,
I also have to keep to foods that I know I can't eat citrus foods either . It's a night mare .
I wonder what my work will say to me on Monday about having more time off work , they weren't very happy last year when I had 5 x 2weeks off work ( one week in hospital then another week to build myself up ) . Do you work .
Take care
X

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Shellly

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Reply with quote  #25 
I've now got a bag made up with everything I need for when I go into hospital ....
I.e. Pyjamas x 2. Tooth brush - paste, wash items , etc
It just saves someone looking for everything I need , not that I need it for a few days when I have CVS ,
It's just handy to have it ready
X

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Layla

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Reply with quote  #26 
Oh I have a bag packed ready to.. i have to call an ambulance as my heart started 2 faturate as was so dehydrated and tried to get over it on my own. 6 days later i was seriosly ill and was in alot longer. Ive learnt my lesson. Just get in over it and home..like you say after and eppisode well I do feel well once got energy bk for a while till you start going down hill again! I worrie alot about how my body will cope when i get older. I do find it hard now at time so god knows how it will go...I've been told you can grown out of it but yet to find or hear of anyone who has! I didn't work for a while my other half struggled to support me but finding a job when you have to be honest and you tell them..you never hear back. I finally got a job working dinners at school been there 4 years now and they do understand always off or in hospital but been hospitalized alot since being there im always getting every bug and germs going and catching everything and starting to think I have been worse since there.. oh I no Good at bowing normally end up on my bum : ) hope you have a lovely eveing we have to get out and have some fun times..make the most of the goods : ) x
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Shellly

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Reply with quote  #27 
It's horrible when you know you have to go into hospital again . Last time I was in hospital ( last week ) I think I went into hospital about 4 o'clock, and the nurse said to my husband we hope to have her out of here tonight, my husband said your joking aren't you , she won't be ready to come home tonight, the nurse said yes she will , but their I stayed for 6 days , when I'm in hospital I don't think they know what ward to put me in , this time I was moved 4 times . And to top it all I was on a air bed you can imagine what that was like , every time I moved felt like I was on a ship at sea , I had to ask if they could change my bed as it was making me feel worse .
It's good to know that you can grow out of this CVS , I just hope it comes very soon as I don't want to live my life in hospital.
It's a terrible feeling knowing that this CVS can start at anytime, I just think when I know a cycle is going to start o no not again.
I've never every been sick and stayed at home I always end up in hospital, I think my husband knows what to do with me better than the nurses.
When I was in hospital, I rang the bell as I wanted to have a wee , but they took ages to come to me ,so I took the plug out of my drip and went to the toilet, but I passed out , next minute I knew I was back in bed and was told never to get out of bed until I had help . Think I learnt my lesson.
I just think to myself I'm so pleased that German consultant was in the jph last May/ June and told me what I had , other wise I'd be non the wiser , I can't believe in 33 years that nobody had a name for what I had , I just thought I was being weak , and couldn't understand when I was sick that I couldn't stop .
X

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Layla

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Reply with quote  #28 
Yep my partner know after 12 years what 2 do with me know and we used have have to tell them lol but after the amount of visit they now know and all the notes come out and the same routeen fluid and sometime paracetamol through drip... they have sent me home from hospital before and I said I didn't feel ready and not thing you know 2 days later I was bk and worse! I still cry 15 years later everytime i know whats coming and he pick that phone up and phone 999 and just what I now have to get through again.. no that's the horrible thing you can't stop even if you wanted to. You have no control what so ever x
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Shellly

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Reply with quote  #29 
Yes I know what you feel like every time I go into hospital, the notes come out 10x bigger than any one else's
And we know the routine , drips and medication .
Please don't take this the wrong way but it's lovely to be able to speak to someone who is going through the same thing as me ( sometimes it feels like I'm the only one ) I wouldn't wish this on anyone.
When was your last hospital visit Layla and do you have to visit as a out patient in between the CVS , The hospital we're talking about putting a camera down my throat to see what is happening, I don't fancy that . We're now going out , so I'll write to you in the morning.
Take care
X

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Layla

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Reply with quote  #30 
I wouldn't take it that way. I know excaually what you mean. Is so nice to know your not alone or going mad : ). last visit Was 4 months ago I'm on a roll. The longest I done is a year wish i had knowen as would of booked a holiday abroad.. but im lucky as in when i start being sick my doctor come out and give me an anti sickness injection just on of chance it might settle. Have I think once! I used to go to out appoinment to see my consultant but now i just go when I have to go in and he come see me on ward. have a lovely even. Speak soon x
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